Children can be very curious and ask anything that comes into their minds. As a young child in elementary school with recessive dystrophic epidermolysis bullosa (RDEB), I would get curious looks and stares from many students at my school. Some children would ask me questions like, “What happened to…
Discussion
Caring for a child with epidermolysis bullosa (EB) is often logistically challenging, socially fraught, and emotionally exhausting, a new Spanish study underscores. Based on the findings, researchers are calling for more proactive support to be given to families affected by EB. “The findings highlight the need for a more…
Discussion
This has been the summer of trips, which is totally unlike our typical summer. We go to Cousin Camp annually, but it’s typically the only big trip we take. But recently we were invited by family to come to Montana for the week, and we absolutely could not pass…
Becoming educated and informed about epidermolysis bullosa is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your EB journey.
There is no cure for EB yet, but there are treatments that can help manage the disease. Learn more about the approved and experimental therapies here.
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